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Podcast: May 12-12-12 Project Member Sara Gorman

It’s a blessing when someone alters your perspective in a positive direction. This month’s project member Sara Gorman did just that! Thank you Sara for being open and sharing how to live well with a chronic illness!

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11 comments

Ok, I really need to get this book! I listened then read the whole interview and kept thinking, that’s me! Especially the whole fever for a week part. I tell my husband all the time, as much as I want to just sleep all day, I HAVE to get out of bed because there are things I HAVE to do. Slowly but surely I’m learning that its ok to stop and rest. Or ask for help(I struggle with this the most). It has been such a great month full of learning about Lupus! Sara you are such an inspiration! Despite Lupus for you and despite liver disease for me, we are living!
Marissa you are doing such an awesome job, keep up the great work! Love ya!

Kim! You made my day. It was validation to have someone acknowledge it’s ok to rest. As simple as that message is, it’s powerful to receive. Yesterday, I looked at babe and said, “wake me up in an hour.” That would have never happened before this month’s project. I was afraid to rest thinking I was somehow lazy, and I was missing opportunities to find ways to work from home again. Yikes, the things we tell ourselves. My brain was racing too much to fall sleep, but at least I took the time to slow down and rest my body. We push and push and our bodies pull and pull! Thank God for Sara’s message!

Thank you so much for your compliments, however, I am learning that it’s a blessing to be the messenger:)

Another fantastic podcast Marissa!! Such a positive and inspiring story despite what life has thrown at Sara. I myself have read the book, and became so engrossed in it that I managed to read the majority of the book in one day!! Although I don’t have lupus myself I still managed to relate to a lot of what Sara had written and many of the lessons could apply to any chronic or life-long conditions. And like Sara, as my symptoms seem to be progressing am looking at making little adjustments to my everyday life – am feeling very fatigued at the moment, so maybe a little nap during the afternoon could be something that I could look at to give me more energy during the evening.

Thank you Marissa for making us all more aware of Lupus and for introducing Sara to the community. Looking forward to the next podcast!!

Great interview. I’ve had my condition from birth, so I didn’t have a traumatic moment where I suddenly became disabled. But as my disease progresses, I have had to let go of things I use to do–however limited they were in the first place. The discussion of self-awareness was fantastic. I think developing a keen sense of self is at least one upside to having a disability.

I was going to wait until this afternoon to listen to your podcast with Sara, but I am SO glad I didn’t. The message that Sara conveyed definitely rang some bells in my head.
I often need to rest throughout the day depending on what I am doing. Many days I push through and don’t rest at all. But when I do take the time to rest, I don’t actually nap. Afraid that I will miss something or not get everything done, I usually sit on my computer catching up on blogs, posts and the like.
I LOVE the poem that Sara came up with. I may paint it on my bathroom wall so that I see it every morning. I am also going to purchase a copy of “Despite Lupus” for myself. I think we can all learn from each other. This is a lesson not to be passed up.

Thankyou so much Marissa & Sara, you are both amazing & inspirational woman. I have struggled to come to terms with lupus for many years. But after hearing Sara speak, I realise it is the emotional side of things I am still fighting so hard against & wearing myself out in the process! I look forward to following you both in your future profects. Go girls!

Thank you Ruth for this beautiful comment. You really pumped me up this morning! The emotional side of chronic illness is an area that I constantly have to monitor. My Grandmother Aka Gram gave me some great advice that I would like to pass on. “You are going to get down, and that’s ok, just don’t stay there very long.” If you need anything, please don’t hesitate to contact me!

Thank you so much Marissa and Sara! I am a very new lupus patient – I was just diagnosed in December – and “Despite Lupus” was one of the first lupus books I read. It was a very difficult time for me physically and emotionally – thankfully it’s starting to get easier, now that the Plaquenil is kicking in, and six months later, I’m making progress in coming to terms with realizing that I’m going to live with this chronic illness the rest of my life. It was a hell of a shock for me, 31 years old, a career that I’m passionate about and that I love (I’m a postdoc working on disease-related research, believe it or not… I’m more used to studying diseases than having them!) and I was definitely a tremendous workaholic. To be honest, “Despite Lupus” scared me straight immediately about the dangers of trying to push yourself through lupus, and hearing firsthand that it can really do more harm than good. It helped me realize that I was going to have to be flexible about my life and plans – and that things were really going to have to change in my life in order to maintain any sort of semblance to a normal healthy life. I started streamlining – embracing minimalism, healthy eating with tons of vegetables, reducing stress, eliminating unhealthy friendships etc – basically, making my health my priority, and trying to figure out how to prioritize and best use my limited energy on what I care about most, and not wasting precious energy on things that aren’t important in the big picture – and doing everything possible to support my health in every way possible. It’s still very early in my lupus journey, and while I wouldn’t wish lupus on anyone, surprisingly there have been some blessings and very positive life changes that I would never have expected! So I have to thank Sara for painting a vivid picture for me in her book of what life looks like if you attempt to “fight” lupus – vs what life looks like if you instead live and adapt *with* lupus – it definitely helped shape my philosophy towards lupus immediately after my diagnosis. And thank you Marissa for this awesome project!

Thank you so much for sharing your personal journey! It’s your story that reminds me the importance of taking an active role in positively and actively combating the negatives that accompany chronic illness. You are a blessing.
I am wishing you all the best this life has to offer! Enjoy your postdoctoral research. Continue to let your passion fuel you. Please stay in touch.